The End of the Road for the Gastrostomy – Week 10

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We’ve moved away from needing medical treatment to feed Mike, in such a short space of time.

Mike was discharged today, from Gastroenterology. Hooray!

In March 2014 (so just four months ago) the plan was for a long period of NG tube feeds, probably followed by a Gastrostomy tube (a tube inserted during surgery, into Mike’s tummy) or even longer term, NG tube feeding.

Our Gastroenterologist, had done all he could to investigate if there was a problem inside Mike and as we’d all suspected, there was nothing. He was reluctant to tube feed, but after months of not growing and a tummy bug, his weight was so low that without funding for Clarissa, tube feeds were the only option left available to us. At nearly two, Mike weighed 8kg, the size of an average 6 month old.

We’d had our initial assessment with Clarissa back in December 2013 and my local NHS was continuing to tell me that services in Manchester could meet my son’s needs. However I was still met at every appointment with a doctor or therapist, at a loss over what to do. The Gastroenterologist was no different, yet every doctor and therapist (with the exception of the Speech and Language Team) had pinned their hopes on him, to fix this.

‘Fix this’ was a gastrostomy and he really wasn’t happy to back this plan, given there was no medical reason for tube feeds, he was insistent Mike needed psychology, not surgery but our hands were tied, because of funding.

When we’d seen the Doctor back in February 2014, I’d cried and shouted desperate for someone just to do something, anything to feed my baby. Shouting at doctors isn’t something that comes easily. It was always my heart doing the talking, while my head was confused at how I might know the answer, over the doctor.

Today, the doctor listened in amazement, as I listed the variety and volume of milk and REAL food, Mike is eating. He had nothing but admiration for the work Dad, Clarissa and I have put in to get to this point. A lovely feeling, especially when I now understand a bit more, about why he didn’t want to tube feed Mike.

There isn’t a clinic for children with sensory based feeding disorders at the Royal Manchester Children’s Hospital (or in many hospitals). There are lots of children arriving at gastroenterology for help just like Mike and without specialist psychology services, tube feeds or starvation are the only options left available. Tube feeds solve the weight and calorie issues but they don’t teach children to eat and create even more problems for already very sensitive children. Starvation shouldn’t be an option either but unfortunately was where Mike fell, for quite some time.

Doctor’s don’t want to unnecessarily tube feed children but the knowledge and specialist psychology services just aren’t available locally. These children can’t be left hungry forever though, so tube feeding is so often the only option readily available to doctors and parents. This strikes me as a huge gap in service provision, crazy when not tubing feeding kids saves the NHS so much money! It all leaves me wondering what kind of difference our story can make, given the success of Mike’s intervention with Clarissa.

The Doctor today was keen to share our story with families just like ours and I hope more than anything; these families will follow in our footsteps and get the right treatment. Obtaining the funding is difficult and so specialist psychology services become inaccessible to many. Often kids end up tube fed, when something else could have been done. Not all doctors are as conscientious, when it comes to thinking of the bigger picture unlike ours either. It’s a vicious circle.

I can already see we are a long way from the tube now. Although Mike still resists feeding, he is taking so much orally and had a decent weight gain now continuously. It’s quite clear his feeding is becoming normal, and ultimately he’s becoming a ‘normal’ child in terms of eating and weight gain. Armed with Clarissa’s technique, we are getting there. The Gastroenterologist wants us to keep in touch, and is there “if we ever” need him again, I’m pretty certain we won’t :)

(NB: If you were interested… every day Mike now eats: banana porridge, chopped fruit, fromage frais, chicken and vegatables pureed, fish and vegetables pureed, fruit puree, peas, custard, teacakes with jam and butter, fruit juice, homemade milkshakes and full fat milk… And he finishes every last bit. Wow!)

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